Our daughter died of a very rare, virtually unknown disease called PVOD or Pulmonary Veno-Occlusive Disease. We did not know our daughter was sick. We only learned of her diagnosis post mortem. We were told by multiple doctors that our daughter was physically fine; all testing showed no signs of any disease anywhere. She was labeled as an anxiety kid and that was that. The doctors stopped looking for any problems, ignored our reports of Aine’s poor health and tried to convince us she was a kid with anxiety having panic attacks (see article to come later).

The only known treatment for PVOD is a full lung transplant. Several life threatening tests and procedures can be performed with no guarantees, only done to buy time for a donation of 8 year old lungs, two of them, to hopefully show up when it’s our turn at the top of the list. She would have undergone grueling days in the hospital, scared of what was to come next, scared about whether she would live or die. She would have been thinking about more doctors and more needles and more recovery rooms.

Because we were unaware of her condition, we did our best to continue with life as normally as possible, getting Aine the help she needed as recommended by her doctors, including cognitive behavioral therapy and alternative medicine. She went to school, played with her friends, and remained remarkably brave facing her own fears in silence and carrying on the best she could.

She spent the last 2 weeks of her life on a family holiday on the Outer Banks of North Carolina. She sat in the sand, played in the waves (with the help of her Daddy), watched dolphins swim past and saw the wild horses on the beach. Still we did not know.

Aine died 2 days after we returned home from our trip.

We agonize each day over the fact that we were unable to help our child and that she suffered without our being able to comfort her. If we had known, we could have reassured her and helped her to be less afraid. We could have held her more. One of the most unbearable thoughts I have each day is ‘if only I could have held her and told her everything would be ok, that we knew she was scared and that we would be right there with her all the time and that she need not feel alone’.

We will forever wonder if it was best to have not known and to have had those last few days together as a family doing what we loved to do the most or would it have been better for her to have had recognition of her illness and a chance at hope.